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Purpose: To describe the extent of participation and engagement in family activities and explore variables potentially impacting on these factors in family activities among girls and young women with Rett syndrome (RTT) under the age of 21.

Materials and methods: The Child Participation in Family Activities (Child-PFA) questionnaire was sent to parents in the target group (n = 42). Additionally, age, number of siblings at home, ambulation level, clinical severity and level of hand function were recorded to explore possible impact. Data were analyzed using descriptive statistics, Fishers exact test and cross-tables.

Results: 23 families participated. Highest degrees of participation and engagement were seen in social and stationary family activities. Indoor activities were frequent and showed high levels of participation and engagement, Outdoor activities were infrequent and showed low levels of participation despite a high degree of engagement. Routine activities were frequent but showed moderate to low participation and engagement. A negative association was found between participation in watching a movie and number of siblings living at home, and positive associations between engagement and age in three family activities.

Conclusion: Therapists working with this target group may benefit from focusing on engagement in routine activities and modification of family activities.

Purpose: Disability affects upwards of one billion people worldwide, the majority of whom live in low- and middle-income countries. Based on survey data from Bangladesh, the aim of the study is to contribute to an improved understanding of the experiences of people with disabilities in terms of discrimination, health, and sociodemographic indicators.

Method: A descriptive analysis of data is presented, from a survey implemented in 2016 on a sample of adult persons with disabilities from 18 districts in Bangladesh (n=1,900). The summary statistics of main indicators and correlation analysis of key variables are given.

Results: Women comprised around 40% of the sample. The mean age was 36 years (minimum 18 years and maximum 55 years). Women had lower socioeconomic status than men (p<0, 01), were less likely to be well-educated or employed, had worse self-assessed health (p<0, 05), and were less likely to be able to read and write. Men were more likely to have a physical disability than women (p<0, 01). Both women and men reported unmet needs in terms of access to assistive products and not receiving a benefit. Around 40 % of the sample reported having experienced discrimination, with no significant differences between women and men.

Conclusion and Implications: Many women and men with disability experience some forms of discrimination, including in matters pertaining to healthcare, education, and employment. Such experiences may have a negative impact on their life chances. However, women and men with a disability differ in several important respects, both in terms of socioeconomic status and types of disability. Such differences need to be considered for effective and equitable policy development.

This report presents the findings from a rapid global survey of persons with disabilities and other stakeholders which took place between April and August 2020. The organisations behind the study seek to “catalyse urgent action in the weeks and months to come,” as transmission rates of COVID-19 continue to rise in many countries and persons with disabilities are again subjected to restrictions which have already had severe consequences.

The report analyses over 2,100 responses to the survey from 134 countries around the world. The vast majority of responses were from individuals with disabilities and their family members. Within the questionnaire responses respondents provided more than 3,000 written testimonies documenting the experiences of persons with disabilities and their family members during the pandemic. The qualitative and quantitative data provide in-depth, comprehensive insights into the experiences of persons with disabilities and the consequences of government actions or inactions on the rights of persons with disabilities.

The report is organised around four themes which emerged during the process of analysing responses received to the survey. These themes are:

1. Inadequate measures to protect persons with disabilities in institutions

2. Significant and fatal breakdown of community supports

3. Disproportionate impact on underrepresented groups of persons with disabilities

4. Denial of access to healthcare

A webinar was held to mark the launch of the report

Aim: Many children with disabilities in low- and middle-income countries do not attend school and one-third are out of school. In order to ensure that education is for all including children with disabilities, research is needed on barriers to schooling to identify targets for intervention. The study will examine the determinants of school achievement among persons with and without disabilities as well as among each type of impairment.

Methods: The study will utilize data from a recent national, representative household survey on living conditions among persons with and without disabilities. The individual level data used in this article comprise 2123 persons with and 2000 persons without disabilities.

Results: The results show that an alarmingly high proportion of persons in Nepal have not accessed formal education, with access being significantly lower among persons with disabilities. While the results may be influenced by the assumed relationship between disability and poverty, results from analyzing the cross-sectional data cannot be conclusive on the influence of disability vs. poverty in determining differences in access and school attainments. Increased environmental barriers, higher age, rural location, and increased levels of disability were found to be associated with lower educational achievement. Pronounced differences in access to education were found between impairment types, with individuals with physical impairments achieving the highest level and individuals with multiple impairments, hearing and mental impairments achieving lowest.

Conclusions: It is necessary both to strengthen the entire educational sector and at the same time allocate resources that will ensure that all children are on board and that particular efforts are implemented to cater for those who are easily side-lined.

This first accountability report, one year on from the Global Disability Summit 2018, presents independent analysis of the 171 sets of commitments made by governments and organisations at the Summit. It also sets out the results of a self-reporting survey completed by Summit participants, updating on progress made against their commitments so far.

The wider impact of the summit is discussed.

The results of the first GDS18 self-reporting survey demonstrate that significant progress has been made on implementation of the 968 Summit commitments. Work is reported to be underway on 74% of the commitments and 10% are reported as already completed, contributing towards an improved and increased visibility of disability inclusion within development and humanitarian action.

Appendix 2 gives country level case studies: Case study developed by Users and Survivors of Psychiatry Kenya; Case Study developed by the National Federation of the Disabled Nepal (NFDN); and Case Study developed by I Am a Human, Jordan

Background: There are multiple factors that make it difficult for learners with a mobility impairment to participate in sport, if not impossible. Unfortunately, it is not known which of these factors can be considered as the most important ones.

Objectives: The main objective was to obtain clarity on the factors that differentiate best between learners who participate in sport and those learners who are not participating.

Method: In total, 140 boys and girls with different types of mobility impairments participated. Information was obtained on inevitable factors such as age and gender, structure factors such as type of school and hostel dwelling and personal factors such as emotions and relationships with parents and peers.

Results: Four factors emerged that explained 22% of the variance in the distinctive characteristics of the group that participates in sport and the non-participating group. Age was the most important variable explaining 9% of the variance followed by trust (an emotional variable), gender and health.

Conclusion: Children with a mobility impairment should be encouraged to start participating in sport at an early age. Specific attention should be given to girls who are more reluctant to participate. Health is a factor that can inhibit sports participation; however, it should not be overemphasised. The emphasis should rather be on the development of trust, which will help adolescents with an impairment to take responsible risks in an adaptive sports environment.

African Journal of Disability, Vol 8, 2019

Purpose: Albinism in Tanzania causes fierce stigmatisation. Although various stigma reduction interventions (SRI) are employed, research on their effectiveness is lacking. This research aimed to develop a tool to measure albinism-related social stigma among high school students in Tanzania. Cultural equivalence was tested for the Explanatory Model Interview Catalogue Community Stigma Scale (EMIC-CSS) and Albinism Social Distance Scale for Adolescents (ASDS-A) assessing conceptual, item, semantic, operational and measurement equivalence.

Methods: The methods used were workshops, in-depth interviews, translation and re-translation, discussions, a test (n=337) re-test (n=142) of the survey, and follow-up focus group discussions (n=25).

Results: The Scales have proven to be adequate on all equivalences other than measurement equivalence. The reproducibility statistics raise questions that can be explained by characteristics of the sample.

Conclusion and Implications: The analysis provides insights for further validation of the Scales, contributes to the discussion about a universal stigma measurement tool and demonstrates the importance of validation studies of existing and proven tools used in a different context.

To learn more about the current status of IECD (inclusive early childhood development) and ECI (early childhood intervention) programs, three international organizations collaborated to conduct a global survey: RISE Institute; UNICEF; and the Early Childhood Development Task Force (ECDtf), which is within the Global Partnership on Children with Disabilities (GPcwd). This large survey was designed in 2016, was conducted in 2017, and the report was prepared in 2018.

The main objectives of the survey were to:

• Map current implementation of IECD and ECI programs and related activities;
• Describe key IECD and ECI program features;
• Identify gaps and challenges in providing accessible IECD and ECI services;
• Document factors associated with successful implementation and scale-up;
• Generate recommendations to inform future policy and program development and national planning and implementation efforts.

The online survey targeted a range of programs, and activities including IECD and ECI services; rehabilitation and habilitation services; humanitarian, emergency, and child Global Survey of Inclusive ECD and ECI Programs 8 protection services; advocacy campaigns; and research and evaluation projects. 

Program respondents provided information on 426 programs that were implemented in 121 countries. 

How to make social protection systems and schemes more inclusive of persons with disabilities is examined. Social protection can play a key role in empowering persons with disabilities by addressing the additional costs they face, yet the majority of persons with disabilities are currently excluded from schemes.

The report identifies a wide range of barriers persons with disabilities experience in accessing social protection to be overcome. It calls for better data on disability, disability-specific and old age pension schemes and expanded coverage; adapting communications about social protection schemes; and improving disability assessment mechanisms. The research underpinning the report comprised involved a review of the literature, an analysis of household survey datasets, and consultations with key stakeholders and persons with disabilities in seven low- and middle-income countries: Brazil, India, Kenya, Mauritius, Rwanda, South Africa and Zambia.

Topics covered include:

• Types of social protection schemes for persons with disabilities
• Levels of investment in social protection for persons with disabilities
• Coverage of persons with disabilities by social protection
• Impacts of social protection on persons with disabilities
• Barriers to accessing social protection and measures to address them
• Links between social protection schemes and other public services